Our son Rowan left this world December 15th, 2016 at the age of ten years old. In those 10 years, he spent a third of his life in the hospital including his last 6 months, as he went through 2 bone marrow transplants in a row. He taught us so many lessons through his life long battle though. He was tough as nails, with a heart of gold, and the faith of 100 men combined. Not a day went by that he didn't say "I love my life!" And he truly meant it.

"Our Little Trooper"

"Let me live, that I may praise you!" Psalm 119:175

Monday, January 9, 2017

"Take 2!!"

Now that the memorial service, burial and celebration of life are over... now that all of my family and other out of town guests have left...now that I have to live without Rowan...now that we have to try to find our new normal as a family...now what? That is where I am today. It was a very difficult day. I took Ian to school, and then I went back to bed. I picked Ian up from school, and then I went back to my room.

I went to take a bath (the first one since Friday)... I used Rowan's monogrammed towels.

I saw his tub toys, still sitting on the edge of the bathtub...

I used his bath wash, so I could smell like him...

I saw his toothbrush and Avengers cup, right next to mine when I brushed my teeth...

The last two blankets that covered his failing body, are laying on my bed.

I have slept with his original "green frog" wubbie every night since he died. I fall asleep with it in my hand. When I wake up, I don't have to search the bed for it...it's still clutched in my fist.

I walked downstairs, and he still has unopened Christmas presents under the tree...

This is SO HARD. He is everywhere. His things are everywhere. I don't want them to be gone. Just like I don't want him to be gone. But it is still very hard...moving forward.

I laid in the tub, crying, thinking of him, talking to him, asking him "how am I going to do this?" I just kept hearing his tiny voice tell me, "Every day...you will get stronger." That is the mantra he and I recited every day of his last month or two in ICU.

A few minutes later, I checked my phone and this is my Facebook memory that popped up:

Today is literally the anniversary of the first day I started this blog, about Rowan, 6 years ago. I felt like he was telling me "Don't stop blogging Mommy. Don't stop telling the world about me."

Next, as I was getting in bed (again), I picked up the journal that he and I wrote in during his 6 month transplant journey in Seattle. The last day he himself felt good enough to write in that journal was just before he moved to ICU, just before he received his stem cells for transplant #2. This is all he wrote that night...

"Take 2!!"

Take 2...take 2...

He was referring to his second transplant...his second chance at life.

I guess this is my take 2 now.

I don't take that as that I need to completely start over. I don't take it as I need to forget the past. But I do take it as encouragement from Rowan...to continue...to keep going...to move forward...to keep trying to share his story, and through those stories, God's light with the world.

I still have a lot of grieving to do. I lost my mother and my youngest son, the baby of the family, within 3 weeks of each other. I cared for him for 10 1/2 years, rarely leaving his side, especially for the last 6 months in Seattle. It will undoubtedly be extremely difficult. But Rowan is giving me gentle reminders, of the importance of me moving forward.

I promise to continue Rowan.

Starting tomorrow, I will start telling the stories of these last few weeks since your death. Then, I will tell all the stories about you that I never had the time to share.

22 comments:

rowan is and will always be a part of you just as Ian and Zoe are please remember them all sometimes we get wrapped up in grief for the ones we have lost and forget those who are still here and need you by all means grieve but live while doing so

We had quilts made from the favorites clothes and blankets. It took almost 2 years before I could pack them up and send them but our family loves the quilts made of my aunt's favorite things. I wrap up in mine when I miss her. It's just a suggestion of something to do with some of his things so you can keep them and use them.

Im so sorry for your loss :'( I know all to well how hard it is to lose 2 people that you love we buried my sister on the 21st of Dec. Amd on the 22nd my mom was hit and passed it had been very difficult and all we can do is liveninute to minute i am not strong enough to live day by day yet we just buried mom on the 3rd of jan . Always on our mind forever in our heart

Carrie, our families prayers are with you. I know you are flooded w well wishes during this diffucult time, and I hope that you know that Rowan's life has an impact greater than those who could have lived 100 plus years.. When I find myself questioning God on why on things in my own life (which are nothing in comparison to what I know you are facing) I remember the verse from James 4:14 I can't recite it perfectly and it's late so forgive me, but I know it speaks that in this life, we are a vapor that appears for "a little while then vanishes"- although this pain is unfathomable, I rejoice today knowing that your time w your son & angel Rowan far exceeds your time on this earth. We are compared to a vapor in God's time. I know you will hold laugh and spend eternity w your sweet Rowan.. again, I can not imagine your pain, but I do know this is not the end of the story. His life's impact is something that's worthy of so much praise!! This life is nothing compared to what we will be living very soon!! And also I praise Jesus for how blessed he was to have a mother and family like yours! -The Navares family Sarah,Tai & Joya

Sweet sister in Christ - what truth, grace & mercy springs from your typed lines and such a wordsmith you are! Thank you for allowing us a glimpse into your life & to experience the pain that you are feeling. Even through all of that - you show the Hope & Eternal life of our Lord & Savior Jesus Christ and this will bring someone who doesn't know Him from the brink of despair. It's exactly what Rowan would have done on this earth and what he would want to continue to happen after he left for home. We are praying for you non-stop Carrie. Know that you are surrounded with love ((Hug)) Andrea

I'm 68 years old, and I cannot tell you how many times I've seen a "healthy" relative pass on shortly before a weaker one. I've seen enough that I believe it's God's plan. Your Mom is taking care of Rowan for you. It's a beautiful thing. Maybe right now you don't see that, and I don't blame you. But ultimately, you will. Love from New Mexico.

Carrie, I read your blog's & can't even imagine how you feel or what you are going through, but I can get an idea by reading your stories. The things he had left behind in remembrance of him! If you would like some time I would love to take you to a movie to try to get you out of the house for just a little while. It's up to how you are feeling. I know you are going through a lot right now. Please keep us in your world so we can share Rowan's story. Love, Dawn Starr

You are an amaning woman, mom, sister in Christ. We've only met once but I know you! I never met Rowan but I know him! Thank you for being so courageous. People need to hear your thoughts and read your words.

You have had 26 days without Rowan but you are 26 days closer to seeing him again in Heaven. I lost my daughter to cancer, I understand your pain and grief. I pray the God of all comfort will wrap his arms of love around you and your family.

Bless your precious heart Carrie ... and your sweet family. Nobody or no words can take away the pain you are experiencing, so I won't try. I pray that God will fill this void in your heart and life in a way that only God knows how to do. Love and big hugs, Brenda (SG)

Your baby taught you well. I loved when the pastor on Friday talked about flipping the "why" question. It is so clear why he lived and as an outsider looking in, it is so clear why God knitted him into your specific family. You and Brian are Rowan's parents for a reason. Zoe and Ian are his sister and brother for a reason. Oh how I wish the hurt wasn't there, yet it is bearing witness to the great love you all have for Rowan. I say "yes" and "amen" to your life's "Take 2." And I also say that there is no time table for grief so grace yourselves for this leg of the race. Thank you again for sharing your heart with the world. We are listening - and we continue to pray.

YOU are an amazing woman and mother. You and Rowan still have so much to share with this world. You,Rowan and the rest of Your Family still have so much to teach us all. I do think you should write a book. In the short ten years of his life, Rowan brought so much Love, Light, Hope, and Inspiration to each of us that were fortunate to get to know him. Just think of the millions more he can impact if you write a book. It might even become a movie!! That would be so wonderful. To see this young man's life, his truly inspiring life shared with the world. To see so much Love, Hope and Goodness shared. This is what our world needs. You, Rowan and your family have started something beautiful. I HOPE it can continue. I believe it is what Rowan and all of you would like to see. Blessings to All! Thank you again for sharing with all of us!

Carrie I grieve with you. I wish I could find beautiful words that actually bring comfort. There are none. Carrie, you, Brian and the children are part of my life, and are in my prayers throughout the day along with my son and daughter.I ask God to let Rowan visit you, like his visits with his little angel friends. Carrie I have no idea how I got through those first few days,the one thing that gave me HOPE and helped me, is a prayer or poem 'If you could see me now you wouldn't shed a tear, though you may not understand why, I'm no longer there. Remember my spirit, that is the real me. Because I'm still very much alive, I've just been set free. Oh If only you could see . . . I carried it with me, from room to room, I took it to church with me,along with Rowan's picture tucked in corner. I took it with me when I went for communion and Father Charles blessed it along with Rowan's picture. I knew all along that God and Rowan sent me to the right place at the right time, it stayed with me long enough to help me. Now it is where Rowan would want it. I can imagine Rowan saying those words to you. Praying for Carrie, Brian, Zoe and Ian, may God and Rowan hold your hand and comfort you. Amen.

Carrie, my heart hurts for you all so much. Rowan wasSuch a sweet boy. His beautiful soul will never be forgotten. He is loved dearly. You and your family are always in our thoughts and prayers. Thank you for sharing your son with us. It has been an honor.

As a medium I have dealt with a lot of pain and grief felt for others, but there is Nothing worst than what you are going through, Carrie.However, I still can tell you, that, for sure, your mother passed away to be able to take care of Rowan in Heaven. Remember he told you she was with you two in the hospital ? I know she was by his side when it was his time to leave this world. I hope this is comforting, even just a little bit.

In Memory of Rowan's 11th Birthday

*Click the link above to purchase a gift in memory of Rowan's 11th birthday.*

In memory of Rowan's 11th birthday, July 21, we are hosting a virtual birthday party to benefit Methodist Children's Hospital (MCH) in San Antonio, where Rowan spent much of his childhood battling for his life. All gifts purchased through this registry will be delivered in person to MCH on Rowan's birthday, July 21, 2017. The toys will be donated to the Child Life Department at MCH and placed in the new play rooms at MCH for many pediatric patients to enjoy during their hospitalizations. The toys on this registry represent a few of Rowan's favorite things. We all know Rowan had such a huge heart for giving and making the good, so this party in his memory is a way of carrying out his legacy by celebrating and doing the things that mattered most to him. Thank you for being a part of carrying out Rowan's legacy, making the good, and honoring Rowan's powerful life while remembering his 11th birthday on July 21, 2017.

On top of the Mountain...

Rowan climbed...rather he ran, to the top of Enchanted Rock this past Summer, just a few weeks after getting out of the hospital again. Our hero!

Just a little of the hardware...hidden under his gown.

Rowan has a g-tube in his stomach for feedings, a broviac central iv line in his chest for nightly intravenous feedings and medicines, and a vp shunt in his head to drain excess spinal fluid from his brain into his abdomen.

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In ICU, post vp shunt surgery...precious angel.

In October of 2010, Rowan started having severe headaches again. He had two spinal taps, just three days apart due to increased cranial pressures (double or triple what they should be). They removed over 55 ccs of excess spinal fluid trying to relieve his headaches. Eventually, when the pain was just too severe and his pressures weren't coming down, he finally had to have a vp shunt placed. When he woke up the next day, he told one of the doctors that he would give him a free autograph for helping get rid of his headaches. A couple days later, he made a sign for me to put in the window of his hospital room, that he says said "Open for business. Autographs $15. Free drink with purchase".

Another battle wound...this one from his Chiari malformation brain surgery.

In January of 2009, Rowan had craniectomy/laminectomy surgery to correct a brain malformation that was obstructing his flow of spinal fluid and causing headaches and other neurological symptoms. They removed a small piece of the base of his skull, shrunk up the bottom portion of his brain, and removed part of his C1 and C2 vertebrae to free up space for the spinal fluid to flow. When we told Rowan that he would be going in to the hospital to get his brain fixed, he thought for a minute and then said, "Will I see Logan (favorite nurse) and can I eat baby ice cubes when I wake up?" When we said yes, he simply said "Ok, Let's do it!"